RE: [SPAM] new member

[Guest guest]

Welcome to the board . I myself have boy/girl twins. They are 9 months. Spencer just graduated from his DOC Band on December 13th. He had severe left side plagio. Alizabeth had a very mild case of brachy, we didn't band her. I think as parents we have a harder time adjusting to the helmet/band. More so than the child does. Spencer had no problem adjusting to it. I can now put hats on him since he was so used to wearing the DOC band. As for the insurance, I would take a look in the Folders section. There is a lot of helpful information there to help you "battle" your insurance company. We are actually appealing United Health in order to be reimbursed for our DOC Band. This board is great and I'm sure you will find all of the info you need. What kind of helmet will your twins be wearing?

Lorie

Mom to Spencer & Alizabeth 9months

[sPAM] New member

Hi all! We are new members and we are looking for some support! My twins are 8 months. My son Dante has severe plagiocephaly due to congenital tortocolis. My daughter has brachiocephaly (wide head, prominent forehead). My pedi did not reccommend the helmets due to cost. But my husband and I are not concerned about money. The twins have been scanned and are due to get their helmets on 2/5. I just want to cry when I think about how they will feel or react to the helmet. Also, I would like any info on insurance claims. I have blue sheild ppo from my work, so any help or suggestions would help! Thanks, and I hope to hear from some of you.

[Guest guest]

Hi –

Welcome to the

group. 5/18 of an inch is the equivalent of 7 mm (or did you mean

5/16? if so, that is 7.9 mm). Typically, normal

is 0-3 mm; very mild is <6 mm; mild is - 6-10 mm; moderate is - 10-15 mm;

severe is - 15+ mm. Most doctors recommend banding over 10 mm.

However is there is a lot of facial asymmetry they may recommend it at lower

levels. What it really comes down to is how you feel about the shape of

your daughter’s head. Ask yourself, " If her head doesn't get

any better than it is right now, am I OK with that? " If your answer is

" yes " then you can probably skip the band. If it's " no " or

" I'm not sure " you might want to consider a band.

My

son spent 20 weeks in his STARband and had no problems in it and we got great

correction. I have no regrets about banding him.

Molly

Novato, California

Nicolas, 2, tort & plagio, STARband (CIRS Oakland)

4/24/06-9/12/06, Graduate!

, 5

, 8

From: Plagiocephaly

[mailto:Plagiocephaly ] On Behalf Of

Sent: 13 March 2008 12:01

Plagiocephaly

Subject: [sPAM] new member

Hello- My name is and my daughter has been

diagnosed with

plagiocephaly. She was fit for a helmut last week ( and

Fillipis). The orthotist said the difference was 5/18 of an inch (her

left side is flatter. She is 2 standard deviations from the norm. Can

anyone tell me how severe she is considered? I got a vague- " that's not

too bad " and am very frustrated.

I am worried about putting her in a helmet- can anyone share their

experience? Was it hard for your baby? Any advice of feedback would be

really helpful! Thanks so much.

[Guest guest]

Hi , welcome to the group. I can't really clarify on how serious your daughters condition is. But I can tell you that if you are noticing that one side of your daughters head is flatter then the other side, it is a good idea to put her in a helmet. Honestly I think parents have a harder time with it then the children do. My son Spencer was diagnosed with Plagio (he was flat on the left side- due to how he was positioned in the womb.)when he was 4 months old. We went down to Cranial Tech and he was put in a band right around 5 1/2 months. He quickly adjusted to the band and had no problems at all. He wore it for 12 weeks and now he has a perfectly round head.

best of Luck, and keep us posted

Lorie

Mom to Spencer & Alizabeth 10 months

Spencer- Left side Plagio- DOC Band GRAD 9/07-12/07

Glendale, AZ

[sPAM] new member

Hello- My name is and my daughter has been diagnosed with plagiocephaly. She was fit for a helmut last week ( and Fillipis). The orthotist said the difference was 5/18 of an inch (her left side is flatter. She is 2 standard deviations from the norm. Can anyone tell me how severe she is considered? I got a vague- "that's not too bad" and am very frustrated. I am worried about putting her in a helmet- can anyone share their experience? Was it hard for your baby? Any advice of feedback would be really helpful! Thanks so much.

[Guest guest]

Thanks- I already feel like I have way more information from just a couple of replies! I could live with her head shaped the way it is- but the orthotist said it could affect her hearing. Was that also a concern your doc brought up? thanks:-)"Foley, Molly" <mafoley@...> wrote: Hi – Welcome to the group. 5/18 of an inch is the equivalent of 7 mm (or did you mean 5/16? if so, that is 7.9 mm). Typically, normal is 0-3 mm; very mild is <6 mm; mild is - 6-10 mm; moderate is - 10-15 mm; severe is - 15+ mm. Most doctors recommend banding over 10 mm. However is there is a lot of facial asymmetry they may recommend it at lower levels. What it really comes down to is how you feel about the shape of your daughter’s head. Ask yourself, "If her head doesn't get any better than it is right now, am I OK with that?" If your answer is "yes" then you can probably skip the band. If it's "no" or "I'm not sure" you might want to consider a band. My son spent

20 weeks in his STARband and had no problems in it and we got great correction. I have no regrets about banding him. Molly Novato, California Nicolas, 2, tort & plagio, STARband (CIRS Oakland) 4/24/06-9/12/06, Graduate! , 5 , 8 From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of Sent: 13 March 2008 12:01Plagiocephaly Subject: [sPAM] new member Hello- My name is and my daughter has been diagnosed with plagiocephaly. She was fit for a helmut last week ( and Fillipis). The orthotist said the difference was 5/18 of an inch (her left side is flatter. She is 2 standard deviations from the norm. Can anyone tell me how severe she is considered? I got a vague- "that's not too bad" and am very frustrated. I am worried about putting her in a helmet- can anyone share

their experience? Was it hard for your baby? Any advice of feedback would be really helpful! Thanks so much. , Ph.D., LPAssociate Director, Behavioral MedicineMcLaren Regional Medical Center810-733-9642

[Guest guest]

I think to some point all of us moms on this board have felt the same way. But don't blame yourself for your daughters condition. The good thing is the doctor caught it early. Since she's not severe, she probably wont have to be in the helmet long. Trust me, parents have a harder time adjusting to it then the child does. And as for society, I learned that if I just decorated the band (paint and stickers) the only real comments I would get complements on how cute the band was. Your doing the right thing by putting her in the band now. Things will get easier-

Keep us posted...

Lorie

Mom to Spencer and Alizabeth 10 months

Spencer- DOC Band GRAD 9/07-12/07 (Left side Plagio)

Arizona

[sPAM] New member

My daughter is 4 1/2 months old and she has brachycephaly. The doctors are telling me that it is not so severe. She also has toricollis, which I can't seem to understand. Since she was two months old she has kept her head up during tummy time. She loves tummy time and has gone on to do it up to 30 minutes. We just ordered her a helmet and have discovered that she qualifies for early intervention. She has been going to physical therapy for a month. Can someone please explain to me what all this means? I am so confused. I think my daughter is great and adorable and now she has to go through all of this. I am having a hard time understanding and dealing with all of this. When does the anxiety end? I am not looking forward to her having the helmet on. Our society can be so cruel and I am anxious about taking her out. There is also part of me who blames herself. Maybe I had her in the carseat too much or lying down too much. Also, will this affect her development? I worry so much that she will be delayed later on in life. I am a teacher and I am so aware of kids development, will she be behind the other students because of this? I know that I am rambling, but I am just so confused and upset. Thanks for your help in advance.

[Guest guest]

Also, I bet people will think that you are a good parent for being

attentive to your child's needs and they will be impressed that you

found the proper care for her

>

> I think to some point all of us moms on this board have felt the

same way. But don't blame yourself for your daughters condition.

The good thing is the doctor caught it early. Since she's not severe,

she probably wont have to be in the helmet long. Trust me, parents

have a harder time adjusting to it then the child does. And as for

society, I learned that if I just decorated the band (paint and

stickers) the only real comments I would get complements on how cute

the band was. Your doing the right thing by putting her in the band

now. Things will get easier-

>

> Keep us posted...

>

> Lorie

> Mom to Spencer and Alizabeth 10 months

> Spencer- DOC Band GRAD 9/07-12/07 (Left side Plagio)

> Arizona

> [sPAM] New member

>

>

> My daughter is 4 1/2 months old and she has brachycephaly. The

> doctors are telling me that it is not so severe. She also has

> toricollis, which I can't seem to understand. Since she was two

> months old she has kept her head up during tummy time. She loves

> tummy time and has gone on to do it up to 30 minutes. We just

ordered

> her a helmet and have discovered that she qualifies for early

> intervention. She has been going to physical therapy for a month.

> Can someone please explain to me what all this means? I am so

> confused. I think my daughter is great and adorable and now she

has

> to go through all of this. I am having a hard time understanding

and

> dealing with all of this. When does the anxiety end? I am not

> looking forward to her having the helmet on. Our society can be

so

> cruel and I am anxious about taking her out. There is also part

of me

> who blames herself. Maybe I had her in the carseat too much or

lying

> down too much. Also, will this affect her development? I worry so

> much that she will be delayed later on in life. I am a teacher

and I

> am so aware of kids development, will she be behind the other

students

> because of this? I know that I am rambling, but I am just so

confused

> and upset. Thanks for your help in advance.

>

[Guest guest]

Welcome to the Group! It sounds like you are on the right track with Evan. How old is he now? My son Spencer was diagnosed with Plagio at his 2 month check up. We did repositioning with him until he was 4 months. After that we were sent to Cranial Tech for our evaluation. Spencer spent 12 weeks in a DOC band and now he has a nice round head.

Best of luck with your journey.

Lorie

Mom to Spencer and Alizabeth 15 months

Spencer- Left Plagio- DOC Band Grad 9/07-12/07

[sPAM] New Member

Hi everyone!I am just joinig for some support for our baby boy that has positionalplagiocephaly and torticollis. Evan was diagnosed at 4 months and we have been doing Physical Therapysince that time. His asymmetry was measured at 2.5 cm. He is 6 monthsold now and he was just casted for his helmet on Tuesday. He will begetting a P.A.P. orthosis.